When someone has a seizure, that doesn’t always mean they have epilepsy. They may have a different condition that few people have heard of: functional neurological symptom disorder.

FND is not always well understood, even by doctors, said Dr. Juliana Lockman in a recent presentation at the Stanford Health Library. The symptoms—seizures, shaking, stiffness, impaired body movement or paralysis, and sensory disturbances—mimic other medical problems that are more commonly diagnosed.

As a result, some people with FND have often been bounced from one medical specialist to another to find the right diagnosis and treatment, said Dr. Lockman, a neurologist and epilepsy specialist. One study of FND patients found the average time elapsed from their first nonepileptic seizure to when they got a correct diagnosis was 7 years.

“It leads to frustration, anxiety, disability. And often the sense that they’re not being heard, or understood. That can make things worse,” Dr. Lockman said.

In recent years, doctors have made progress in identifying how to diagnose FND. Even better, they now have therapies that can improve symptoms in many people.

FND is a common condition. It is as common as multiple sclerosis and trigeminal neuralgia.

FND was found in 16 percent of new patients going to neurology clinics in one UK study. In our centers, as much as 30 percent of patients in most neurology clinics have this diagnosis. Yet it is often not recognized by the public and neurologists and other providers do not know how to manage it.

Symptoms can include seizures, jerking, or being unable to move parts of the body like arms or legs. Some people appear to faint, falling from a sitting or standing position. Others are able to hear people talking, but can’t respond. Symptoms can be chronic or episodic and involve cognitive, sensory, and motor symptoms.

Standard medical tests like MRI often show no abnormalities in the structure, or “hardware,” of the brains of FND patients. Yet tests of brain function (the “software”) show clear problems with the function of specific brain circuits, Dr. Lockman said.

It’s the incompatibility of the clinical exam findings with known neurological and medical conditions that enable doctors to diagnose FND. The diagnosis is based on the person’s overall clinical picture, not a single test.

“There’s not a lab test or an imaging study that you can get to diagnosis this,” Dr. Lockman said.
“We often can’t find a single identifiable cause.”

Instead, there are multiple factors that doctors consider. A diagnosis of FND often comes with a history of other medical events of psychological stressors that predispose people to the condition.

Many have an underlying vulnerability to FND from a physical trauma, psychiatric illness, physical or sexual abuse, or family history of psychiatric illness. Coexisting psychiatric disorders are found in 90 percent of people with FND.

People with FND often “have had a lifetime of adversity,” said Kim Bullock, MD, clinical associate professor of psychiatry and behavioral sciences at Stanford. That can be medical adversity, emotional adversity, or biological adversity. (Biological factors include a genetic predisposition.)

Early childhood interactions with family that encouraged someone to express emotions through their body, rather than through words, can be a predisposing factor. Low social support or financial strain can contribute.

“Then they have a trauma to their body,” said Dr. Bullock, who is director of the neurobehavioral and virtual reality clinics. It can be an accident, or being victim to violence or a traumatic medical procedure.

Once these vulnerabilities take hold, a major stressful life event can trigger body sensations and, eventually, altered behavior. “Symptoms are real,” Dr. Bullock said. “A person does not fake or intentionally produce them.”

In the brain, an area called the amygdala registers threatening or fearful events and stores these memories. “The amygdala is the smoke detector of the brain,” Dr. Lockman said. “It’s the first responder if there’s an emergency situation. It starts the ‘fight or flight’ response.

In FND patients, the amygdala can be very sensitive and may need a long time to calm down from an upsetting event. The amygdala of patients with functional movement disorders often has abnormally high levels of connection to another part of the brain, known as the supplementary motor area. That makes it more likely that emotional turmoil can be translated into body movements or sensations.

At the same time, the prefrontal cortex in the brain may be lower functioning in FND patients. The prefrontal cortex is involved in executive function, which includes attention, reasoning, planning, and judgment. Lower function may make it easier for this area to be “hijacked” during a high-emotion situation.

As much as 47 percent have dissociative disorders, which leaves people feeling they are detached or outside their bodies. They can lose connections to thoughts, memory, awareness, and perception.

“All this adds up to a complicated picture for the patient and the doctor. Just getting a diagnosis of FND is often a major step to recovery,” Dr. Lockman said.

For the best treatment, delivering a diagnosis is combined with education for the patient about FND. “One of the very most important parts of treatment is education about the disorder,” Dr. Lockman said. “Validation that the symptoms are real is very important.”

There’s a pretty high recovery rate, in terms of not having any more episodes, after education about the disorder. One study found that up to 44 percent of FND patients had no recurring symptoms after receiving a diagnosis.

“The diagnosis actually can be curative,” Dr. Bullock said.

Therapy can help people discover what triggers their symptoms and treat any psychiatric disorders. Different kinds of therapy, including behavioral or cognitive, can be part of the learning process:

Cognitive behavioral therapy targets thoughts and behaviors that are interfering with a person’s life. They learn to change their thoughts or beliefs to “reframe” their lives and solve problems. One study that included Stanford patients found seizures decreased 51 percent in FND patients getting this therapy.

Hypnosis can be used, when patients feel the first cues of distress, to stop a seizure before it starts. They can also be taught to do self-hypnosis.

Dialectical behavioral therapy is a form of cognitive behavior therapy that aims to give FND patients the skills to reduce symptoms. One study at Stanford found that symptoms decreased 66 percent in patients getting this therapy.

Physical therapy can be effective for FND patients with functional movement disorders or paralysis. A 2012 study found 60 percent retained improvement more than 2 years later.

Psychodynamic group psychotherapy may be helpful. An exploratory Stanford study found the rate of seizures fell 85 percent in patients getting this therapy.

Involving friends and family early can help patients find their way to getting a diagnosis and eventual treatment.

“It can be really hard for people supporting those with this disorder to know how to help,” Dr. Lockman said. “These symptoms themselves can be difficult for another person to understand.”

“They can be either visible – you actually see weakness, or tremors, or a nonepileptic seizure. Or they can be invisible, like pain or dizziness.”

Family or friends often wonder, when their loved one is having a seizure or other emergency, whether they should take them to the hospital emergency room. The best way to know that is by talking it over in advance with a doctor to make an emergency plan.

Also, getting a cell-phone video of the person’s symptoms to give to the doctor can help a lot to get an accurate diagnosis, Dr. Lockman said. With a diagnosis, family and friends can follow through to help the patient get treatment. For some, that is a long-term process to change behavior.